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Thread: ALS- MND ongoing

  1. #1
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    ALS- MND ongoing

    Hi All,
    Diagnosed 17/10/2017
    private gp, presenting with foot drop
    blood test
    neurologist 1
    MRI
    EMG and NCT
    neurologist 1
    nerologist 2
    definite diagnosis

    Retired November 2018

  2. #2
    Forum Member Kayleigh's Avatar
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    Hi Jonboy,

    Welcome to the forum. I am sorry about your diagnosis. There is a lot to come to terms with, but I hope you are already being supported by an MND nurse, occupational therapist, speech therapist and physiotherapist etc.

    The history of your diagnosis is very similar to mine, except that I was diagnosed this year.

    You will find lots of support from the friendly folk here. Please feel welcome to ask for advice and support.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 7th January 2019 at 20:38.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  3. #3
    Forum Member JAY TEE's Avatar
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    Jonboy well you have joined good place to find everything you need to know about MND. I was also formally diagnosed two weeks after I retired at 65 in May 2014. I cannot walk and talk now but still got use of my right side so drive around in my wheelchair. Hope you not got it to fast and have you stored your voice yet. That’s something I wish I had done. I get good support from my old friends and my local council been good as well. Best wishes for the new year John

  4. #4
    Forum Member Terry's Avatar
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    Hi Jonboy and welcome to the forum;

    That's a lot of facts, how are you now getting on?

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
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    That is a can of worms Terry, I have had very little support.
    Wheelchair took 6 months of arguing
    profiling bed - took some time
    stairlift came on the day I couldn’t walk anymore
    We self funded a disabled bathroom. £10,000

    no mnd nurse
    no OT support
    no physio
    no consultant

    I am reliant on the community matron and my GP.
    My GP tried to get me a bipap but the home respiritory “team” said I didn’t qualify. sp02 = 92%

    I have not sat around sulking though - I got on a fixed things myself , EMS, TENS - solved constipation, cramp - got a private physio but that is a bit expensive now. We ran out of money so I got a consultancy job, but they sacked me in november 2018 because the company is moving to France and India - thanks Brexiteers.

    I recently acquired my own Nippy3+ but i need a IPPV breathing circuit and Breas will not sell me one! Dreamwear nose pillow is super comfy - can thoroughly recommend it.
    Last edited by jonboy53; 10th January 2019 at 09:42.

  6. #6
    Forum Member Barry52's Avatar
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    Hi Jonboy53 and welcome to the forum.

    Your post sums up the system of everything arriving late and having to justify your needs. I refer to equipment because the clinical professionals are generally very helpful. I don’t know if this is as a result of you being diagnosed privately. I was also diagnosed privately but offered a second opinion via the NHS and the multi discipline team are excellent.

    Ask your GP to link you with one of the MND clinics throughout the country.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  7. #7
    Forum Member Kayleigh's Avatar
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    Hi Jonboy,

    I am sorry to hear that you have such little support from 'medical professionals' other than your GP and community matron.

    There is a lot of support and equipment etc that we are 'supposed' to be entitled to without paying for them, but how are you supposed to access them if you don't have an NHS physio/OT/speech therapist etc? - and no consutant - what the heck is going on????? Sounds like there is a serious lack of funding in the area where you live.

    As Barry has already mentioned, your GP should be able to refer you to an NHS consultant/MND clinic.

    Just in case you don't already know - the MNDA have got Regional Care Development Advisers, and there might be one in your Region. They offer friendly support/advice. In case you need it, this is the link to further information and contact details:-

    https://www.mndassociation.org/getti...ent-advisers/#

    Despite the situation you are in, it sounds like you are being very pro-active, and that you have got a great positive attitude and are making the most of things - that's wonderful, good for you!

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 8th January 2019 at 13:21.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #8
    Forum Member Ellie's Avatar
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    Hi Jon and welcome.

    Sorry you're being left to your own devices - are you seeing a private Neurologist or do you attend an MND Clinic?

    BiPAP use tends to be indicated when Lung Capacity - specifically FVC/SVC - shows a steady/marked decline, rather than on SpO2 figures alone.

    BiPAP machines and settings are prescribed by Healthcare Professionals for an individual's needs. Is there a reason why you want to use the Nippy in IPPV mode rather than in Pressure Support mode? IPPV mode has no EPAP - did someone tell you this is OK?

    No, Breas won't sell an individual its products.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  9. #9
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    my FVC is still at 100%, I bought my own spirometer, which ties in with hospital readings. It only takes 5 minutes to do rather than the whole day wasted going to hospital. However my diaphram is weak so in the night my tidal volume is low and I wake up with a headache. I can clear it with some breathing excerises.
    All this indicates hypercapnia to me, so I have bought a capnograph - I won’t get it until the end of the month.
    IPPV is particularly suited to MND patients according to my research.
    The bipap settings may be prescribed by “healthcare professionals” but I don’t have access to any. I am sure I can work it all out.
    Last edited by jonboy53; 9th January 2019 at 08:14.

  10. #10
    Forum Member Kayleigh's Avatar
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    Hi Jonboy,

    Good for you for being so resourceful!

    Many people would be " up S... Creek, without a paddle" if they had to manage like you do with such little support from the medics!

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 8th January 2019 at 19:30.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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